As much as I'm excited and will be enrolling my daughters in this study, I'm equally upset that it will require me to add yet another set of tests for both Grace & Meghan. They are easily traumatized by blood tests, and while this research may help them down the road, it means that they must sacrifice some of their DNA. This is the part of their Alpha-1 that I don't like. Making them participate in research gives me some pause, but I know that this study is being conducted to try to figure out why some people with Alpha-1 never develop significant liver disease and others develop it at birth like Grace did. Understanding that may lead to a cure.

In any case, I hope that parents of Alpha-1 children sign their kiddos up for this study. It is a way for us to contribute to a possible cure. I know they need over 250 Alphas to make this study work. Here is the email I received. Please consider enrolling your Alpha-1 child:

This is an update from the Cholestatic Liver Disease Consortium. The following study is currently recruiting participants. This update provides information such as a study summary, eligibility criteria, and a list of participating center locations. If you are interested in participating in this study or you have more questions, please contact the center nearest to you.